This past Thursday (July 27), I finally saw my geneticist after waiting three months for this appointment. I saw the same geneticist that I went to when I was a sophomore in high school. My orthopedist referred me back to see him so we could discuss what to do to try to strengthen my bones so I won’t fracture or micro-fracture as much and decrease the chance of breaking a bone again.
As a sophomore in high school, I was on Pamidronate Bisphosphonates by IV injection. It was going to give my bone calcium to strengthen my bones as well as other nutrients. I was scheduled to receive Pamidronate once a month for 18 months.
One week before I was supposed to get my second round of Pamidronate, I went back to the hospital to have a meeting with a dentist, oral surgeon, orthodontist, and other medical professionals. We were going to discuss the next step in my jaw alignment surgery. They saw that I started receiving Pamidronate. They were worried that I wouldn’t heal fully afterwards and they wouldn’t be willing to proceed with anything until I was off Pamidronate. Even though I only had one treatment of Pamidronate, it was still enough to be too dangerous to do the surgery. My geneticist told me that even with the one treatment, I still wouldn’t be able to have the jaw alignment surgery for several years when the Pamidronate is fully out of my system.
It was devastating because I’ve been dealing with my jaw alignment problem since 7th grade. I’ve been insecure and it’s lowered my self-confidence. My jaw alignment surgery still hasn’t happened yet since we had to wait until the Pamidronate was out of my system, and then I went to several dentists and oral surgeons and kept being referred to other specialists and got nowhere…and that brings us to today.
My geneticist wanted to put me on a different kind of Bisphosphonate that is similar to Pamidronate but I’m refusing to until we decide what the plan is going to be for my mouth. It’s frustrating because I want to go ahead and get the Bisphosphonates to make my bones stronger so I don’t fracture as much but I’d rather wait until my mouth is done before continuing. The trouble is that my mouth is so fragile and severe from DI that two hospitals in Cincinnati will not even touch my mouth whatsoever so we made an appointment to go to OSU in August and meet with oral surgeons and see if they would be willing to do something. This has been a long process and it’s not something that will get fixed overnight but all I can do is just be positive and have a positive outlook.